POZ Community Forums
Meds, Mind, Body & Benefits => Research News & Studies => Topic started by: Dr.Strangelove on January 24, 2014, 03:34:09 am
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Official Website (http://www.immunityproject.org/)
Donate here (https://pledge.immunityproject.org/the-free-hiv-aids-vaccine)
The Verge: The Immunity Project hopes to build a better HIV vaccine through crowdfunding and machine learning (http://www.theverge.com/2014/1/23/5338676/the-immunity-project-hopes-to-build-a-better-hiv-vaccine-through-crowdfunding)
As much as I like crowdfunding and can't wait to see an effective HIV-vaccine being released, I very much doubt that a bunch of social media experts and a crowdfunding campain will solve that problem thousands of dedicated scientists have been working on for a couple of decades...
From their website (http://www.immunityproject.org/faq#how-will-this-vaccine-work):
“WHAT IS THE STATUS OF THIS RESEARCH BEING PUBLISHED IN A PEER REVIEWED JOURNAL?
We are awaiting publication in a peer-reviewed journal.”
Another excerpt –
“This is, of course, highly speculative since no clinical testing has been done to date with our candidate vaccine.”
They are really good at PR, though!
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Dr.
Thanks for posting this, and I agree that crowd funding a vaccine is very much a long shot. They need to raise about $500k for trials on mice (with humanized immune systems) and then $25 million for each of the phase I and II trials. This would make them the largest crowd funded project by far.
I think they are more than "a bunch of social media experts", the head of the organization founded the drug company Aradigm Inc. The underlying technical work (machine learning of elite controllers to identify the target amino acids) was done at Microsoft e-Science Research, who put $1 million into the organization. Even so - they are still very much a scientific underdog.
Here is another article on them: http://tinyurl.com/o7gh363
I see this as a sign of the times - it could be one of the many social media attempts that didn't work or it could be the equivalent of the Kahn Academy's impact on education, or Twitter's impact on the Arab Spring....
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I'm not saying this is a scam. And I'm a big fan of crowdsourcing in general. I guess what bothers me is that they are trying to sell their vaccine a little too hard. They dumb down the science way too much for my taste.
For example:
SAFE: Our vaccine does not contain killed viruses, live viruses, or genetically-modified viruses.
As if the question whether a vaccine contains live/killed/GM viruses is the only determinant for safety...
Their whole - admittedly very professionally designed - campaign makes it sound as if the only obstacle of making an HIV vaccine available for everyone is just a matter of raising those $482,000. And in my opinion that's just not very honest.
As far as I see, they don't have any data yet that shows this vaccine will succeed where so many previous vaccine candidates failed. And at this moment we have several other vaccine candidates (such as GeoVax) that are much further progressed and show actual promising results.
Maybe in the end I prefer the publicly funded research where you get the results straight forward without all the marketing BS. People put a lot of hope in a vaccine and a cure which is the reason why such marketing promises in such a setting bother me a lot more than let's say some campaign collecting a few million USD to Free Willy (https://en.wikipedia.org/wiki/Keiko_(orca))...
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Dr. I hear all of your concerns, and agree with them, but in the end I think this is a good thing because:
1. This is a trial that would not happen otherwise. We are talking about additional funding added to the universe of trials, not competing for the publicly funded pool of money.
2. While this project does have "marketing BS" so do the publicly funded projects - particularly as they get filtered through the media for the general population. So we are just trading one form of marketing BS for another.
3. This project is reaching audiences that wouldn't otherwise be touched or engaged -- the downside to that is that it may be creating false hope, the upside is that people are more aware. I have no idea (and don't think anyone does) what the real trade offs are, but I would err on the side of awareness.
4. Maybe, just maybe ---- this will add a spark to other research, in terms of learning's or a competitive push. This may be hoping for the Butterfly Effect, which is what you don't want to see (because it fits into the false hope category) -- I kind of like this potential but am able to filter it through reality too.
In the words of the great philosopher Wayne Gretzky,
"you miss 100% of the shots you don't take."
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I am leaning towards agreeing with Dr. Strangelove.
Not enough information here on how their vaccine works exactly. Very dumbed down with the key message being "PLEASE DONATE TO US".
If they really are on to something they should release more information about it and the money would roll in if they actually discovered anything.
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I am leaning towards agreeing with Dr. Strangelove.
Not enough information here on how their vaccine works exactly. Very dumbed down with the key message being "PLEASE DONATE TO US".
If they really are on to something they should release more information about it and the money would roll in if they actually discovered anything.
I tend to agree. Fair enough, have your main body of information "dumbed down" for the regular Joes and Josephines out there, but also include detailed information for those of us with a better understanding.
It all feels too fishy to me - it wouldn't be the first time someone did something dodgy to make off with loads of research money. (And you can't tell me that this guy (http://forums.poz.com/index.php?topic=51990.0) didn't line his pockets with a good bit of that $19,000,000)
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They do say they want to give out the vaccine for free which is nice.
I just wish we could get some more details. They make it sound very simple....but I am skeptical.
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They do say they want to give out the vaccine for free which is nice.
For me, that's just another big red flag.
If something is too good to be true, it is probably a scam, just like all those scam emails that tell you you've won a lottery you never even entered. ::)
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it seems that not everyone in the poz.com organization thinks this is a scam...
http://www.poz.com/articles/salim_abdool_karim_2676_24826.shtml
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it seems that not everyone in the poz.com organization thinks this is a scam...
http://www.poz.com/articles/salim_abdool_karim_2676_24826.shtml
He isn't part of the "poz.com organisation". I wouldn't necessarily consider an opinion piece from this guy in the magazine as a full endorsement from poz.com.
Call me cynical, but I've seen too many scams before (and many intelligent, well-regarded people being duped by such scams) and I would think long and hard before handing over any of my cash.
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Poz.com certainly vets what they post as opinion pieces, and if the opinion piece is soliciting funds I am sure they agree with the organization. I am sure that the fact that "this guy", who happens to be the Director of CAPRISA and a professor of epidemiology at Columbia, was one of many contributing factors that led Poz.com to conclude that this wasn't a scam.
The broader point is that one does not have to do much due diligence to see that this is not a scam -- especially to be equated with the "lottery winning scams".
We need to do our due diligence before passing judgement and publicly stating an organization is legit or a scam.
The media has the power to make the innocent guilty and the guilty innocent Malcom X
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Poz.com certainly vets what they post as opinion pieces, and if the opinion piece is soliciting funds I am sure they agree with the organization. I am sure that the fact that "this guy", who happens to be the Director of CAPRISA and a professor of epidemiology at Columbia, was one of many contributing factors that led Poz.com to conclude that this wasn't a scam.
The broader point is that one does not have to do much due diligence to see that this is not a scam -- especially to be equated with the "lottery winning scams".
We need to do our due diligence before passing judgement and publicly stating an organization is legit or a scam.
The media has the power to make the innocent guilty and the guilty innocent Malcom X
I'm sure you know more about how poz.com is run than I do. ::)
If you want to give them your money, go ahead. I won't stop you.
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The broader point is that one does not have to do much due diligence to see that this is not a scam -- especially to be equated with the "lottery winning scams".
By the way, I never actually claimed it was definitely a scam. It's just my opinion that something doesn't feel right about it and paying attention to my intuition has served me well over the years.
You, of course, are more than welcome to your own opinion about it.
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For some reason I remember that gay couple who tried to crowdfund their multiple (delusional) wedding ceremonies, and then were crowd shamed:
:o
http://gawker.com/help-this-needy-couples-parents-attend-one-of-their-th-1350721195
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As a follow-up:
Here is a Ask-Me-Anything on Reddit (http://www.reddit.com/r/IAmA/comments/1w29dx/we_are_creating_the_hivaids_vaccine_to_give_away) by the Immunity Project
Some interesting questions and answers there.
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I think crowd-sourcing funds for such a big project is a bad idea. Because you're not technically funding something concrete. Its not to build a school in Uganda, or send humanitarian aid to Typhoon victims in the Philippines. We would be funding the chance of finding a cure. Say we manage to rope in the big wigs of the entertainment industry to rally around this cause, put out concerts in support of this cause and make their appeal go 'viral' on social media. What happens if the research shows otherwise? Would this affect appeals for genuine help? Like providing condoms and ARVs to developing countries.
I think it would be better to stick to the tried and true method; of lobbying the government. To get them to increase funding for research, to speed up approvals for drugs, and legislate patent law such that it balances the interests of Big Pharma with the interests of Humanity. ACT UP did it in the 80s, and I'm convinced it worked.
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As of today the Immunity Project has raised over 70% of the funds for their pre-clinical study. They have also published an executive summary white paper with more details on the project, which is here:
http://tinyurl.com/mhqz7wz
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As of today the Immunity Project has raised over 70% of the funds for their pre-clinical study. They have also published an executive summary white paper with more details on the project, which is here:
http://tinyurl.com/mhqz7wz
Good to know Jmarksto, thanks for the info, let's cross fingers, someone here called it an scam when it wasn't, how come some people can never admit to their mistakes.
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Good to know Jmarksto, thanks for the info, let's cross fingers, someone here called it an scam when it wasn't, how come some people can never admit to their mistakes.
A little passive aggressive huh ? . No one said emphatically it was a scam so I'm wondering if you are willing to admit you are mistaken on this point .
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it is probably a scam, just like all those scam emails that tell you you've won a lottery you never even entered. ::)
I'm wondering if Ann is willing to admit she made a mistake.
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By the way, I never actually claimed it was definitely a scam. It's just my opinion that something doesn't feel right about it and paying attention to my intuition has served me well over the years.
You, of course, are more than welcome to your own opinion about it.
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Here is a good article in the journal Nature on the tension between the conventional science community and crowdfunding the Immunity Project.
http://tinyurl.com/ngl3zrx
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Here is a good article in the journal Nature on the tension between the conventional science community and crowdfunding the Immunity Project.
http://tinyurl.com/ngl3zrx
Just read this article and it does not reflect well for this "project." I put a lot more faith in other studies going on right now like Sangamo or Calimmune or Geovax.
This article really reflects how I think all of the skeptical people feel.
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Just read this article and it does not reflect well for this "project." I put a lot more faith in other studies going on right now like Sangamo or Calimmune or Geovax.
This article really reflects how I think all of the skeptical people feel.
I agree, many of the other research efforts have a much stronger scientific underpinning, so fortunately we do not have to choose between this project and other research or advocacy efforts...
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Well its interesting to explore the construction of knowledge and the potential for research of "crowds". Just like crowd funding is interesting. Will the research also be crowd, or just the funding?
Also its interesting when non-scientists have a crack at science.
That said, reading the tinyurl article doesn't build much hope for this particular project.
Still, if all the money donated is coming from people or groups that have money to give to "speculative" projects, expendable income that is, its not really a waste, is it?
As long as its not some sort of scam by the administrators of the project just to line their own pockets... Now that would be immoral and criminal.
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Good to know Jmarksto, thanks for the info, let's cross fingers, someone here called it an scam when it wasn't, how come some people can never admit to their mistakes.
I'm wondering if Ann is willing to admit she made a mistake.
By the way, I never actually claimed it was definitely a scam. It's just my opinion that something doesn't feel right about it and paying attention to my intuition has served me well over the years.
You, of course, are more than welcome to your own opinion about it.
George, I'm more than happy to admit when I'm wrong, but I don't think I'm wrong about this situation. It still doesn't feel right to me and the fact that others who know a lot more about vaccine research than I do are also sceptical would seem to validate my suspicions.
I'm still not saying it's definitely a scam, but I really don't think it's totally legit either. Time will tell. If I do turn out to be wrong, don't worry sunshine, I'll admit it. I'd be happy to admit it because if I am wrong, then that would mean they have a great success on their hands.
But I doubt it.
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Still, if all the money donated is coming from people or groups that have money to give to "speculative" projects, expendable income that is, its not really a waste, is it?
As long as its not some sort of scam by the administrators of the project just to line their own pockets... Now that would be immoral and criminal.
That is basically the crux of the problem. If the speculative project fails, how would anyone know if it was a genuine shot to begin with, or a complete scam, or a mix of both (i.e genuine shot but poor research resulted in low quality data).
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George, I'm more than happy to admit when I'm wrong, but I don't think I'm wrong about this situation. It still doesn't feel right to me and the fact that others who know a lot more about vaccine research than I do are also sceptical would seem to validate my suspicions.
I'm still not saying it's definitely a scam, but I really don't think it's totally legit either. Time will tell. If I do turn out to be wrong, don't worry sunshine, I'll admit it. I'd be happy to admit it because if I am wrong, then that would mean they have a great success on their hands.
But I doubt it.
My apologies Ann, you're right... time will tell, after so many wannabe cures it's better to be remain cautious.
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My apologies Ann, you're right... time will tell, after so many wannabe cures it's better to be remain cautious.
Thanks, George.
As much as I hate to be cynical, I've seen too many false claims over the years. Some (most) have been motivated by greed (scams) and some (far fewer) have been perpetuated by people with their hearts in the right place, but with their heads up their nether regions (clueless do-gooders).
I'm starting to think the people at the center of this project fall into the latter camp, rather than the former. At least I hope that's the case if this is as dubious a project as my guts are telling me it is. I've grown tired of watching of charlatans get rich off other people's misery, and not only where hiv is concerned.
But yes, time will tell regarding this project. I'm not going to be holding my breath though.
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Another follow-up. The journal Nature has a critical and interesting article about the project.
Nature: Crowd-funded HIV vaccine project sparks debate (http://www.nature.com/news/crowd-funded-hiv-vaccine-project-sparks-debate-1.14675)
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Here is another article from the Medical Daily on the project:
http://tinyurl.com/medical-daily-immunity
The author of this article recognizes the criticisms, although the conclusion is much more favorable.
It is worth noting during this discussion that there was also significant criticism for the RV 144 study too, which ended up decreasing the funding (and yes, there is a big scientific difference between the two studies), which is outlined in this report:
http://www.vaxreport.org/Back-Issues/Pages/MoreSurprisesStemfromRV144.aspx
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Another follow-up. The journal Nature has a critical and interesting article about the project.
Nature: Crowd-funded HIV vaccine project sparks debate (http://www.nature.com/news/crowd-funded-hiv-vaccine-project-sparks-debate-1.14675)
That's the same article Jmarksto linked to a week ago. I got all excited because I thought you found a new article with more information. ;D
Here is a good article in the journal Nature on the tension between the conventional science community and crowdfunding the Immunity Project.
http://tinyurl.com/ngl3zrx
Here is another article from the Medical Daily on the project:
http://tinyurl.com/medical-daily-immunity
The author of this article recognizes the criticisms, although the conclusion is much more favorable.
I would have said "slightly more favourable" than the Nature article. It seems to me the author of the Medical Daily article is nearly as much on the fence as I am. He even ends with the phrase, "Qui Vivra Verra", which isn't all that different to my comment, "time will tell".
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I would have said "slightly more favourable" than the Nature article. It seems to me the author of the Medical Daily article is nearly as much on the fence as I am. He even ends with the phrase, "Qui Vivra Verra", which isn't all that different to my comment, "time will tell".
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"much more"....."slightly more"....to some degree we are splitting hairs, and to some degree our interpretation (and thus choice of words) is a reflection of our personal perspective on this project in general.
I tend to like disruptive technologies and market approaches - while they are very much long shots, that is where quantum change occurs. Disruptive change (almost by definition) comes from outside the field being changed, so naturally there will be significant objection, push back and denial from the incumbent market players (which we are seeing in this case).
Here is another example of disruptive change that may be very useful to us at some point:
Ignorance led to invention of stem cell technique, Discoverer was freed by what he didn’t know
Dr. Charles Vacanti is an unlikely protagonist for one of the most startling scientific discoveries in years.
The genial 63-year-old anesthesiologist who left stem cell scientists shaking their heads in wonder and puzzlement last week, with the discovery that a simple acid bath could be used to generate powerful stem cells, doesn’t even have a PhD.
http://tinyurl.com/Boston-Globe-Stem-Cell-Discov
Back to the Immunity Project: The odds are very, very much against this project and everyone putting money in should understand the odds. However, for the cost of a few cheesburgers, DVDs, or Lattes that the donors give up to fund this project (and acknowledging that this is not a scam) what have we got to loose? If the answer to what we have to loose is that it creates false hope -- well, the traditional approach has not provided an alternative....yet.
qui vivra verra, yes time will tell - and the more research trials that are done the less time that it will take.
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I view research similar to navigating unknown seas.
If you happen to discover "land" (and even an entire "continent" = super-effective treatment or cure), awesome! And this has happened many times in medicine.
However, back then, our understanding of biology was more limited. Nowadays, researchers have literally mapped out a lot more. There are still fuzzy areas to explore, but we have more refined models to navigate.
So, research has become more and more focused with clearer targets to reach. There have also been far more successes with focused research. Practically most of the ART's are perfect examples.
When some group like the Immunity Project comes along and HOPES for success, it's almost no different than sailing blindly (or shooting in the dark). We'd all like them to succeed. At the same time, we don't expect much.
Regardless if they use Kickstarter or other methods to raise funds, money is money - be it from charity, government, direct from people, etc. Most people here appear more concerned if 1) they're misleading everyone and/or 2) they're wasting or stealing the money.
So long as they aren't doing anything ethically questionable, aren't diverting funds from other promising HIV projects, and actually carrying out their mission, I see no problem.
BTW, I question their view of elite controllers as the ideal model. Elite controllers aren't as successful at controlling HIV as we think. That being said, I do think that population a good start.
http://tagbasicscienceproject.typepad.com/tags_basic_science_vaccin/2014/02/defining-elite-controllers.html
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That's the same article Jmarksto linked to a week ago. I got all excited because I thought you found a new article with more information. ;D
Oh, I'm sorry, I must have missed Jmarksto's post!
But here's a new article (hopefully :) ):
WIRED: Crowdfunded free HIV vaccine: as unlikely as it sounds (http://www.wired.co.uk/news/archive/2014-02/17/immunity-project-hiv-vaccine/viewall)
It's fairly detailed, though not really more favourable.
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This article is obviously written by a lay person who doesn't uses bizarre terminology in describing the vaccine research that the Immunity Project is planning to fund (ie., By hacking and analysing their blood, experts will attempt to unlock key factors on why HIV controllers are able to retain very low viral loads and unable to develop AIDS.) The article does say that Microsoft donated $1 million towards this project, so perhaps there are credible people in the scientific community behind it.
HIV Cure: Immunity Project Plans Free Vaccine for Global Use Based on Blood of Naturally Immune Infected People
By Ryan Inoyori | February 24, 2014 1:54 PM EST
Experts are looking into possibilities of AIDS cure from HIV-infected patients called "controllers" who contracted the virus but never got sick. The Immunity Project aims to create free HIV vaccine for global population based on the blood from HIV controllers.
HIV Controllers Research
Immunity against HIV/AIDS is a very rare state and people called HIV controllers with this natural trait may be the key to unlock the first free and functional vaccine. HIV controllers have the natural ability to become immune against the dangerous effects of HIV such as getting sick due to opportunistic infections or reaching latent stage known as AIDS.
For every 300 people with HIV, only one of them has the natural immunity to the virus and can live without immediate needs for antiretroviral since the disease do not progress to AIDS.
Researchers are looking into this superhuman biological trait in order to figure out the blood pattern and proteins which made HIV controllers immune to the virus.
"We believe that controllers are an important part of moving forward with vaccine development because they are clearly doing something right in defending against the virus," Dr Reid Rubsamen, CEO of the Immunity Project told Healthline.
Researchers will use the latest technology based on computerised analysis to find which part of controllers' blood are able to fight off or resist the HIV infection and latent effects.
The Immunity Project
The help of computer scientists from different universities and industries will allow the non-profit organisation called The Immunity Project to focus on determining HIV life cycle on controllers.
By hacking and analysing their blood, experts will attempt to unlock key factors on why HIV controllers are able to retain very low viral loads and unable to develop AIDS.
"These beneficial targets have been identified by researchers in university laboratories and private industry who have used computer-assisted statistical analysis to essentially reverse engineer the targets on the HIV virus preferred by the controller's T-cells," Dr Rubsamen explained.
Statistical analysis of T-cells behaviour from blood of controllers revealed that they attack specified targets on the virus which forces it to weakened state and unable to progress to develop full-blown AIDS.
Creation of Vaccine
Their findings about special traits of HIV controllers pave way to the development of HIV vaccine and according to the Immunity project, these targets have been formulated into the Flow Pharma vaccine candidate.
A vaccine based on HIV controllers' design will allow non-infected HIV people to become HIV controllers themselves - somewhat spreading immunity against a fast-spreading virus. If the vaccine works perfectly in other humans, HIV/AIDS epidemic may come to an end very soon.
Due to their game-changing planning, the Immunity Project already received great funding and still continues. Microsoft donated $1 million for the effort but still require more than $100,000 in order to advance to clinical trials of using human blood in mice.
To contact the editor, e-mail: editor@ibtimes.com
http://au.ibtimes.com/articles/540163/20140224/hiv-cure-immunity-project-plans-free-vaccine.htm#.UwvG7uNdXa4
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I thought the Immunity Project had fizzled, but apparently they are still going strong (or at least were a few months ago). Here is an update on their website:
http://tinyurl.com/go2gtd9 (http://tinyurl.com/go2gtd9)